Womenhealth

When UK suicide rates were released last year, there was a sigh of relief: perhaps the tide was turning. While the suicide rates in young people were deeply concerning, rates for men – which had been consistently high since 1981 when the Office for National Statistics started recording – had finally dropped.

This year, however, seems to have reversed that optimism. The increase in death by suicide overall has jumped by 11.8 per cent. The latest set of statistics show suicides among men have risen by an extra 521 deaths between 2017 and 2018, with a sharp increase of 31 per cent for young men aged between 20 to 25.

But while female suicide has remained mostly at the same rate, the rate in young girls and women aged 10 to 24 has risen by 83 per cent in the last six years – a record high. Since 2012 the rate has increased from 1.8 deaths per 100,000 females (106 deaths) to 3.3 in 2018 (188 deaths).

Some of the increase can be explained by coroners now using a broader standard of proof to record suicide. Previously, the higher standard of proof required to record a death as a suicide meant suicides were likely to be under-reported – a long held bugbear for mental health campaigners.

Professor Louis Appleby, professor of psychiatry at University of Manchester, leads the National Suicide Prevention Strategy for England. He told i the rise in young people is cause for concern because it’s following a different pattern to other age groups.

“Suicide rates are strongly linked to deprivation,” he says, “and it’s possible that young people experience this differently. We used to think it equated with unemployment but now economic adversity is more diverse: debts, job insecurity, in-work poverty, zero hours, lack of suitable housing.”

‘“What comes across is a more intangible deprivation,” he explains. “They are the most highly educated generation we’ve seen but they struggle to find stable jobs. They live in one of the richest countries in the world but can’t afford to rent a flat’ – Professor Louis Appleby

The increase in anxiety in young people for instance, isn’t because they are less resilient or more prone to it, but because there is a different set of drivers.

“What comes across is a more intangible deprivation,” he explains. “They are the most highly educated generation we’ve seen but they struggle to find stable jobs. They live in one of the richest countries in the world but can’t afford to rent a flat. Is this a society that treats people fairly, that has something to offer, a future I want to be part of, based on the right values? If enough young people feel the answer is no, there are some who are vulnerable for other reasons who will be put at risk.”

As for girls and young women specifically, one of his studies found many of the stresses facing teenagers before they died – exam stresses, bullying, bereavement – were more common in girls.

The Mix, a multi-channel support service for young people under 25, told i girls and young women comprise of a large portion of their helpline callers. “Around a quarter of users mention depression (27.8 per cent) and or self-harm (22.9 per cent). A fifth (20.4 per cent) talk about feelings and emotions, 14.7 per cent mention anxiety and, interestingly, 11.4 per cent talk about family and 9.4 per cent talk about relationships,” a spokesperson said.

“It makes people feel like everyone else has a perfect life, when in reality this is far from the truth in my opinion,” Hannah says of social media. (Photo: KIRILL KUDRYAVTSEV/AFP/Getty Images)

Social media is often blamed as a catalyst for girls and young women feeling suicidal, because it supercharges feelings of inadequacy and worthlessness. Hannah, 21, who has had suicidal thoughts since she was 14, believes that it’s true, saying her first experience of it was due to low self esteem and having no confidence in herself.

“It makes people feel like everyone else has a perfect life, when in reality this is far from the truth in my opinion,” she says of social media.

Hannah made an attempt on her life in April, year after losing her grandmother and experiencing a depressive episode. She then made another attempt at the end of May. “I felt like it was my only option left,” she says. “Little did I know it definitely wasn’t my only option and I am lucky to be alive today to support people and give out advice myself.”

Hannah’s personal experience is that she found Samaritans very helpful, was seen very quickly by services, and never felt judged. But mental health campaigner Anneli Roberts, who runs the Pigletish blog, says she doesn’t think there are enough resources to help everyone.

“Despite reports of ‘investments’ into mental health services, the average local authority has increased its spending by just one per cent” – Natasha Devon

“In Wales, where I live now, there are no government funded IAPT services like in England. People have to rely on the services provided by charities if they can’t afford to pay privately. When I was living in England it felt very much like a postcode lottery.”

Natasha Devon MBE, campaigner and author of A Beginner’s Guide to Being Mental, agrees lack of services is a huge issue. “Despite reports of ‘investments’ into mental health services, the average local authority has increased its spending by just one per cent. Thresholds for accessing treatment are high, waiting lists are long.”

An anonymous source who works in mental health policy, told i while suicide prevention work such as NHS plans, local authority led plans, statistical monitoring and guidance are good, the larger contextual issues need to be addressed.

He says the high rates are “symptomatic of not listening to and acting on the concerns of our future generations and being prepared to say we need to really change this.”

For now, it seems to be a case of working out a strategy that is specific to the issues, concerns and challenges facing girls and young women specifically, as well as reducing the harms caused by broader social factors such as social media, bullying and harassment.

October 24, 2018 was the day that changed my family’s life forever. I will never forget the words my 55-year-old mum said to me and my three siblings on that day. “I have some news: I’m going to die. I’m sorry. I will never see my grandchildren.”

My world collapsed. I was in shock, disbelief and utter despair, and then I was grieving for my mum, who was living and yet dying.

Mum’s cancer wasn’t detected until it was too late. She had been experiencing lower back pain at night which wasn’t getting any better; a scan revealed a secondary tumour in her pelvis. A few days later they found the culprit, the primary cancer: a tumour in her lung the size of a 50p coin. What a little bastard.

‘What we do know is that Mum has never smoked, yet she has lung cancer. I didn’t even know that was possible’

Mum’s lung cancer has what is called “metastatic spread” to her liver, pelvis and spine, and possibly her brain. But we don’t know for certain about her brain. Some things are better left unknown. What we do know is that Mum has never smoked, yet she has lung cancer. I didn’t even know that was possible and it didn’t seem fair.

One in two of us will get cancer in our lifetime, yet every diagnosis is still a shock to that individual, their family and their friends. I used to be scared of the word cancer; I associated it with bald heads, headscarves, sickness and death. Now I know that cancer stripped back is simply cell mutations, or cells gone wild. There are all different types and treatment can be successful. Nevertheless, a loved one’s cancer diagnosis hits you like a ton of bricks.

This is probably a good moment to mention that my dad was diagnosed with cancer three weeks after my mum. In contrast to my mum, my dad did have symptoms (stomach pain after eating) and he was diagnosed with lymphoma; a tumour was wrapped around his small bowel. Dad was very fortunate in receiving six months of IV chemotherapy before being told he was in remission and, as a bonus, he got to keep his hair.

I sometimes wonder what it would be like if mum had not been diagnosed before dad. How would I have reacted? Would my world have fallen apart? Would I have felt hopeless, despair, worry, anger?

‘Yes we cried when dad was diagnosed, yes we were shocked, but we also laughed at how ridiculous it was that they both had cancer at the same time’

I suspect I would have felt the same way, despite knowing my dad’s type of lymphoma is more treatable. I would have had no point of reference, no scale of ‘bad news’ to adapt my reaction accordingly. I did not have the same appreciation for life and the same understanding of death. Yes we cried when dad was diagnosed, yes we were shocked, but we also laughed at how ridiculous it was that they both had cancer at the same time.

My mindset was different with dad’s diagnosis; I focused on the practical side of things. I also knew dad’s cancer was treatable and, while the treatment is extremely unpleasant and carried risks, I knew he was likely to survive his cancer, unlike mum. Myself and my three siblings, aged 17, 21, 25 and 27 at the time, focused on fundraising, knowing our unusual story would raise awareness and this gave us all a focus as we named ourselves team “Cancer²”.

While dad underwent chemotherapy, we were all grappling with the idea that he would be poorly, but hopefully alright in the end, and that mum was going to die. Certain or near-certain death in the near future – saving some miraculous cancer cure – is the most bizarre concept to comprehend. We know mum will die, we just don’t know when. The timing of her death remains uncertain, but the very fact of it happening in the not so distant future has been made certain. That fact boggles the mind.

Lung cancer is the most common cause of cancer death in the UK and accounts for 21 per cent of all deaths, according to Cancer Research. In the year 2016, 35,620 people in the UK died from lung cancer.

‘Lung cancer is also the leading cause of cancer deaths in women, killing more women each year than breast cancer and ovarian cancer combined’

Lung cancer is also the leading cause of cancer deaths in women, killing more women each year than breast cancer and ovarian cancer combined. Despite this, lung cancer research has historically been underfunded. Adding to this is the stigma which arises from the known link with smoking, and the assumption that every person with lung cancer is a smoker. But what is less publicised is that between 10 and 15 per cent of people with lung cancer have never smoked, according to the Roy Castle Lung Cancer Foundation, and about 28 per cent of cases of lung cancer are not caused by smoking.

After decades of being underfunded, research around lung cancer and life-saving drugs and treatments still need to catch up. Drugs and treatments that could, or at least could have, saved my mum’s life. Lung cancer still has pitifully low survival rates, which have not seen much improvement in the last 40 years. In 1970, 10-year survival was just less than five per cent. Today it is just five per cent.

Smoker or non-smoker, you have lungs and you are therefore at risk of lung cancer. If you have a persistent cough or have been coughing up blood, regardless of whether you smoke or not, I urge you to see your GP. If you smoke, I urge you to seek help to quit. I urge you to educate your friends and family on the symptoms of all cancers and to look out for signs in each other.

‘A loved one being diagnosed with cancer is horrendous, a loved one dying from cancer is even worse, unimaginable, but it doesn’t half change your entire outlook and perspective on life’

In a way, I feel privileged to now truly know what is important in life. I would, of course, give my right arm to go back to a pre-cancer diagnosis life. To save my mum. I dream that I could return to my selfish life living in ignorant bliss of the ills of the world and with my limited scale of empathy and overreactions. But I can’t save her. While I will not give up hope for future treatments, I can’t undo the diagnosis.

A loved one being diagnosed with cancer is horrendous, a loved one dying from cancer is even worse, unimaginable, but it doesn’t half change your entire outlook and perspective on life, sometimes for the better. Cancer has made me and my family stronger. My scale of what is a really bad day has vastly expanded. I am appreciative of the little things. I am less wound up by the trials and tribulations of life. Cancer has that effect on the families it indiscriminately invades; you come to understand what is truly important. Cancer gives you this understanding by chucking a ticking time bomb into the heart of your family.

My three siblings and I will be by mum’s side every step of the way, cherishing every moment, and will do all we can to raise awareness of this horrible disease, knowing that this terrible tale has changed us forever.

The Roy Castle Lung Cancer Foundation is the only UK cancer charity to support everyone affected by lung cancer. To find out more about lung cancer, symptoms and support available, visit their website.

Hormone replacement therapy (HRT) shortages could have a “devastating” toll on trans women across the UK, in addition to the impact on cisgender women being treated for menopausal symptoms, a hormone specialist has warned.

As i reported in July, women across the UK are facing a “major and widespread shortage” of the drugs, which replace sex hormones in women who are going through either the menopause, premature ovarian insufficiency (also known as early menopause), or – in the case of trans women – gender-affirming treatment.

Sarah Brown, a Liberal Democrat politician and trans equality campaigner, told i she is aware of trans women who have had issues accessing their normal prescription, and she is concerned about the potential physical and psychological impact that on-going shortages could have on the community.

‘If you’re on again, off again, you can start having real problems emotionally,’ says Sarah Brown

“Transition is difficult to start with so – particularly if you’re early in transition – if you’re on again, off again, you can start having real problems emotionally,” Brown says.

For trans women, the impact of HRT withdrawal varies depending on the stage of transition. “If the woman hasn’t had gender reassignment surgery – so she still has testicles and is able to produce hormones – and she is not on an anti-androgen, like a GnRH analogue – which stops the testicles from working – then running out of HRT may result in a return of masculine features,” explains Dr Leighton Seal, a Consultant Endocrinologist at London’s Gender Identity Clinic.

“This would be really devastating for a trans woman,” says Mary Burke, a Clinical Nurse Specialist in Hormone Therapy at The London Transgender Clinic. “They would start to feel a lot more dysphoric, and that leads to feelings of depression, and huge social anxiety.”

“You would need to withdraw for a good few months, probably one or two years, for it to impact on things like bone health or cardiovascular risk,” he says – Dr Leighton Seal, Consultant Endocrinologist

For a trans woman who has had surgery, or is on a GnRH analogue, Dr Seal explains: “She would go into the menopausal state – so she may have hot flushes, tiredness, mood instability, feeling run down. But more importantly, her transition would stall. When trans women start off on hormones they go through a puberty induction. A lack of HRT may stall the development of her breasts, the feminisation of the hips, skin softening. So that may have more of an impact on her than a woman who’s using HRT to alleviate the symptoms of menopause.”

Brown tells me she is also concerned about the effects of long-term HRT withdrawal, which in ‘post-op’ trans women can lead to osteoporosis and cardiovascular issues. However, Dr Seal says there is no need for trans women to worry about this in relation to the current shortages. “You would need to withdraw for a good few months, probably one or two years, for it to impact on things like bone health or cardiovascular risk,” he says.

“I think trans women are perhaps more aware of these long-term effects,” Burke adds. “All of this is discussed with them when they start taking hormones, so they worry even more when they hear they can’t get their hormones, because they think their bones are going to become brittle very quickly. In reality, though, it would need to be a very long-term thing.”

Despite the general confusion around the extent, causes and likely duration of the current situation, Burke adds that it’s important for trans women not to panic, and to be aware that there are alternative options available to them.

“I know it is a constant battle and a worry. A lot of my trans patients are desperate because it takes them so long to get treatment on the NHS, or they have problems because their GPs don’t know enough about prescribing to trans patients. But there are always alternatives if pharmacies can’t get your usual HRT. Speak to your GP or your pharmacist. The pharmacist will know what’s available, and which products are an equal equivalent to your usual prescription,” she advises.

‘My mood is all over the place’

Medical student Emma* has been taking HRT for just over two years, and first started having issues getting hold of her prescription around six months ago.

“Tablets seemed harder to get hold of, so I was switched to patches, which all the local pharmacies struggled to get too. My GP put me onto the sachets of estradiol gel, but even with these I can only get a week’s supply (one box) at a time, even though my prescription is for a month’s supply,” she says.

‘I’m constantly distracted, over-tired, and my mood is all over the place – especially when I notice things like my arm hair growing thicker again’ – Emma

“I keep getting ‘we still owe you’ notes from the pharmacy, and some days I go along only to be told to come back again after they’ve been able to find some. My GP actually advised me to ration my supply a little, so I can stockpile what I have. She suggested taking the medication every other day, rather than daily, but halving my dose of hormones has been tough on me.”

“Medical school is tough anyway, and I’m in the middle of working on an assignment, but I’m constantly distracted, over-tired, and my mood is all over the place – especially when I notice things like my arm hair growing thicker again,” she says.

Added to that, over-stretched mental health services and a lack of university assistance mean Emma had struggled to access support for the mental and psychological toll that all this is taking on her.

“The university can’t give special dispensation on assignments because of medication supply shortages, so I’m having to struggle through with very little help,” she explains. “And discussing my lower moods with my GP just led to the suggestion of going on a 24-month-long waiting list for talking therapy.”

‘I don’t really like thinking about having to go cold turkey’

Zoe* tells i she began self-medicating with HRT in 2006, and her GP has been prescribing her Elleste – one of the brands currently out of stock – since 2012. “I get my prescription every two months, but my pharmacy hasn’t been able to supply Elleste for about the last four months,” she says.

“The pharmacist initially sourced Zumenon as an alternative, but now can’t supply that either and has asked me to go back to my GP to see if the two brands they can get will be ok.”

In our first conversation, we’re speaking on Monday and Zoe tells me she is waiting to hear back from her GP. “I’ve resorted to taking a reduced dose – one tablet a day, not two – to try and make it last, but I think by Thursday I’ll be out,” she says.

“I’m not sure if being ‘post-op’ makes it any better for me compared to those who aren’t going the surgical route,” she adds. “For me, my body effectively produces no [sex] hormones, which is why the HRT starts to matter. I don’t really like having to think about how it’ll be if I have to go ‘cold turkey’.”

The following evening I hear from Zoe that her GP has issued a prescription for an alternative form of HRT – but she is clearly affected by the stress of “cutting it fine”, and doesn’t relish the thought of going through the same thing again in two months when her next prescription is due.

Stockpiling and self-medicating

On the issue of self-medicating with online supplies, Dr Seal is clear: “I would never recommend people to self-medicate (Getty)

i has also been made aware of several other trans women either having to halve their normal dosage, like Emma, or dip into their emergency stockpiles. For Brown too, although she is not currently affected by the shortages, there is a real anxiety about the thought of being left without.

“Over the years I’ve made a habit of ordering my prescription a little bit early, or occasionally only taking one pill a day, so I’ve built up a stockpile of about three months,” she explains. “I’m also about to buy several months worth of ‘grey market’ hormones over the internet, just in case.”

On the issue of self-medicating with online supplies, Dr Seal is clear: “I would never recommend people to self-medicate. You don’t know what source it’s coming from, so there may be unreliable amounts of hormones, or there may be no hormone there at all.”

As with cisgender women suffering from menopausal symptoms, Dr Seal points out that different brands of HRT do affect different women differently, so switching could impact on the way you feel, as well as your energy and drive.

“Changing brands could also possibly result in different hormone levels, and with trans women we do actually measure their hormone levels,” he says. “If hormone levels are not in the target range it may stall the physical development, you may have mood instability, and in some trans women, if oestrogen levels fall, testosterone may rise and give more masculine symptoms. This can be very disturbing, so we would need to monitor hormone levels as well if a trans woman was changing to a different brand of HRT.”

A Department of Health and Social Care spokesperson said:

“We know how distressing this shortage is for patients and it is our priority to ensure they can access the medicines they need.

“We are aware of ongoing supply issues with some HRT preparations due to manufacturing issues and are working closely with all suppliers to maintain overall flow of medicines to patients.

“Supplies of alternative HRT products are available and any patient affected should discuss alternatives with their doctor.”

In 1950, when he went to work in a relief camp for people suffering from the drought known as the Year of Red Dust, he left notes for Ismail, then 13, telling her to ensure patients received medication and had sutures removed. “I did not know what these medicines were for but I was the boss’s daughter, so I would go to whoever was in charge and say, ‘By the way, dad wanted you to remove these.’”

She noticed the hospital never had enough instruments or supplies. “I can’t remember the exact moment when I decided I would build a hospital, but I do know I had a very clear image of how it would be run.”

Ismail went on to do more than that. Now 87, she is a former first lady of Somaliland, its first woman cabinet minister, foreign minister, and nurse-midwife, an anti-FGM campaigner and, today, the director of the maternity and teaching hospital she founded in the capital, Hargeisa. She is certain she is the only foreign minister in the world to have had to leave a meeting to deliver triplets.

As First Lady of Somaliland, Edna Adan Ismail met US President Lyndon B. Johnson (Photo: supplied)

Fight against FGM

Ismail’s life has been defined by her fight to improve maternal healthcare in Somaliland and the fight against FGM. Somalia, and the autonomous region of Somaliland, has the highest rate of FGM in the world, with the procedure carried out on up to 98 per cent of women. Ismail’s mother and grandmother arranged for her to be cut when she was eight and her father was away from home. It was a deeply traumatic experience she has spoken about around the world.

The problem is that the practice is “glorified” in some communities, she says. “The ones who haven’t had it say, ‘Why have we not been purified? Why am I being denied this?’ But we need to educate young people, young parents, and not glorify the procedure.”

Ismail says she only became a midwife because her father made sure she learned to read and write, which was almost unheard of at the time for girls in the region. When she was 17, Ismail moved to the UK to train as a nurse after winning a scholarship. She was accepted on a course at the West London Hospital in Hammersmith.

Today, Edna Adan Ismail is the director of the maternity and teaching hospital she founded in the capital, Hargeisa (Photo: supplied)

Education

The rotation she enjoyed most was in surgery. “I loved operating theatres,” she says. “They were so clean and efficient. The satisfying sense of accomplishment was like nothing I had experienced before.”

When she returned to Somaliland three years later, she was determined to become a surgical nurse. “I didn’t want to be a midwife,” she says. “But then my father asked, ‘What are you going to do for women? What will you do if there’s a woman in labour who needs you?’ My father gave me so many opportunities and never stopped me from doing anything. It felt like it was his way of asking me to do something.”

Ismail returned to London and learned to be a midwife at Hammersmith and Lewisham hospitals. When she was delivering four or five babies in a day, she understood why her father had suggested she train as a midwife. “Somaliland has the highest maternal mortality rate in the world. There are still areas where they have never had a trained midwife. I have scars of a forceps birth, my sister died after just such a delivery and someone who wasn’t medically trained dropped and killed my baby brother. I would return to Somaliland with my midwife training where it was desperately needed.”

Edna Adan Ismail with her pet leopard in 1968 (Photo: supplied)

Facing new challenges

When she returned in 1961 to the new Somali Republic, formed of British Somaliland and Somalia, she met new challenges. She was assigned to work in a hospital, but was given no position, no salary and had to fight to be allowed to drive. “The administrators had never encountered a woman with nursing and midwifery certificates.” People reacted with hostility, saying she would never marry.

In fact, she married three times. Her first marriage was to Mohamed Haji Ibrahim Ega when he was head of government in British Somaliland five days prior to Italian Somalia’s independence. They met in London and he went on to become prime minister of Somalia (1967-69) and president of Somaliland in 1993. They divorced five years later. Ismail married twice more, but says midwifery and the hospital are her most important relationships. In 2002, after stints working for the World Health Organisation (WHO), Unicef and the Ministry of Health, Ismail opened the Edna Adan Maternity Hospital. It was built on a former rubbish dump donated by the government.

Most nurses or midwives had fled or been killed during the Somali Civil War, which destroyed Somaliland’s health infrastructure and 95 per cent of its cities between 1982 and 1991.

As foreign minister of Somaliland, she met US president Bill Clinton (Photo: supplied)With seventh Secretary-General of the United Nations, Kofi Annan (Photo: supplied)

Ismail recruited more than 30 candidates and began training them while the hospital was still under construction.

There are now 200 staff members and 1,500 students, and almost three-quarters are female. “I just did what needed to be done,” she says about her decision in 1998 to sell her home and car, and donate her UN pension, to fund the hospital. Patients come from as far away as Mogadishu, more than 800km south, and neighbouring Ethiopia, to seek treatment in the best-equipped general hospital around. More than 14,000 babies have been delivered and more than 140,000 patients have been treated.

In 2002, Ismail became Somaliland’s first female cabinet minister. She became foreign minister the following year, but continued to work in the hospital. “I am a midwife first and foremost. One day when I was meeting with a European delegation, I knew that there was a woman in the hospital who was going to have triplets. When the hospital called I had to say, ‘I’m sorry, I know we have got important things to discuss but I really have to go. I’ll talk to you tomorrow.’”

I haven’t been to the doctor since I took up competitive weight-training about a year ago, but in need of a prescription for the pill, I made an appointment.

It was all fairly straightforward – I told her my reasons for going on it, and she took my blood pressure. She asked me for my weight, and then my height, and I knew she was going to talk about BMI – Body Mass Index – the universal screening tool to assess if your weight is within a healthy range.

“Your BMI is 26,” the doctor said, giving me a meaningful look. The normal range of a person’s BMI is 18.5-24.9kg/m2, and is derived from your weight and height. It does not distinguish between lean muscle and fat tissue.

Before she could say anything more, I cut her off by saying: “I do weights, that’s why it’s higher.” The reason I cut her off was because increasingly, I’ve been hearing about how perfectly healthy people are being are being lectured about their BMI and losing weight, without finding out how fit that person is, what type of training they do, and whether or not they have a history of eating disorders that might make the conversation triggering.

She did, however, acknowledge that BMI wasn’t a great indicator but that doctors “had to say it anyway” to patients as part of due diligence.

But the damage was done and I then spent the next few days obsessing about it being too high. This type of doctor-patient interaction first came to my attention through my own sister Priya, who is a size 10 and follows the CrossFit fitness programme, and was told to lose three kilograms during a routine medical by doctors who had used guesswork to calculate her BMI.

‘Muscle is much denser than fat. So for muscular people such as weight trainers and athletes, their weight may be healthy even though their BMI is classified as obese’ – Sejal Jacob, dietician

“She was asking me to reduce five per cent of my body weight – I was 60kg – in this really cavalier way,” Priya said, “without knowing anything about my personal history or if I’d had a history of eating disorders. Luckily I don’t, and I do intuitive eating, but this still stuck in my mind for several weeks afterwards. It was really irresponsible.”

BMI has been widely criticised in the last few years, not just for the blunt way in which doctors interpret it, but because it was invented in the 19th century. The guidelines for weight and risk, for instance, have evolved alongside other developments in medicine.

“Our weight is a representation of muscle, bones, fat and water,” says Sejal Jacob, spokesperson and dietitian. “Sixty to 70 per cent of our body is water. Hence, just the single measure will not provide a comprehensive overview. Muscle is much denser than fat. So for muscular people such as weight trainers and athletes, their weight may be healthy even though their BMI is classified as obese.

“NICE (National Institute for Health and Care Excellence) urges caution on interpretation of BMI and highlights the need for clinical judgement.”

But the problem seems to be that caution isn’t being used, and that BMI is being wielded clumsily and in broad strokes.

“It’s a brief intervention aimed at reducing behaviours like smoking and alcohol. Although not a behaviour, weight reduction is included in this initiative. So theoretically someone could go to their GP about a sore throat or ear infection and be sent home with a referral to Slimming World. This can leave the patient feeling shamed, embarrassed or dismissed by their doctor.

“This can stop them from going to their doctor for routine or preventative care for fear they will just be told to lose weight. Because they are by nature a brief intervention, it doesn’t allow the doctor to ask important assessment questions about eating disorder or disordered eating, past diet attempts, or whether they are currently engaging in health-promoting behaviours.”

“The GP proceeded to ask me whether I like takeaways and how often I eat them. I was not eating takeaways, I was swimming every week, walking to work, eating a balanced diet and not drinking to excess,” says Amy (Photo LEON NEAL/AFP/Getty Images)

Amy, 29, a communications manager who lives in Kent and is a size 14, identifies with this, after an encounter with a GP led to her not engaging with a doctor for several years.

During a visit for repetitive strain in her wrist, she says: “The GP proceeded to ask me whether I like takeaways and how often I eat them. I was not eating takeaways, I was swimming every week, walking to work, eating a balanced diet and not drinking to excess. She made it clear she didn’t believe me and suggested I do more exercise to get the weight off.

‘The practice nurse took my height and weight and told me I was dangerously overweight and started giving me diet advice once more. I completely froze and started crying’ – Amy

“The whole experience meant it took several years before I registered with a new GP. At my initial appointment, the practice nurse took my height and weight and told me I was dangerously overweight and started giving me diet advice once more. I completely froze and started crying. I had only done this so I could book a smear test. I did not attend said smear test because, once more, had been made to feel dreadful and judged.”

The conflation of body weight with health is a recurring story when it comes to BMI and people who do strength sports or play rugby. Justin, 32, a business intelligence developer from Manchester, said he gained a lot of weight when he was injured and was told that he was morbidly obese at 18st 8lb.

He spent two years focusing on diet and exercise and went down to 12st 5lb. He now has 14 per cent body fat.

“I run 20 miles a week and weight train three times a week,” he says. “Last week my doctor told me my BMI was too high and I needed to lose weight. I just feel like there’s no winning. I’m in the best shape of my life but their sliding scale says I’m unhealthy.

“The thing that causes me the most concern is that with the NHS’s reliance on it, will I be denied treatment for something down the line because I’m a higher risk according to my BMI despite being in very good shape?”

Professor Helen Stokes-Lampard, Chair of the Royal College of GPs, said: “GPs are highly trained to have sensitive, non-judgemental conversations about how a patient’s weight might be affecting their health and wellbeing – and to recommend lifestyle changes that could improve it.”

But, she does acknowledge GPs need more time with their patients to unravel the many complex issues affecting a patient’s weight, “especially if this not the main reason they visit us in the first place, and the current standard 10-minute appointment simply isn’t long enough.” For this, she wants to see more investment injected into primary care.

Dr Punam Krishan, a practising GP, says compassion and common sense needs to be applied in the doctor’s surgery when it comes to BMI. “One size does not fit all. Guidelines are there to guide us but are not bible. Patients come from various different backgrounds, cultures, follow varied lifestyles and it would be naïve to assume that the same numbers and treatment plans will work for everyone in the same way.”

When Fiona Anderson, a wheelchair user, tried to book her cervical screening (smear) test at her local GP practice five years ago, she was told the practice did not have the facilities she needed – a hoist – to access screening. However, Fiona, 30, says her GP reassured her: “Your risk of getting cervical cancer is low because you’re a wheelchair user.”

Perplexed, Fiona asked how using a wheelchair could possibly lower her cancer risk, and says the response was: “Well, you’re sexually inactive.” Fiona couldn’t believe what she was hearing. “I’m a mum to two young children!” she says. “Just because I’m in a wheelchair, you cannot assume that I don’t have a sex life. But even people who aren’t sexually active should still have the right to access screening for their own reassurance and peace of mind.”

Fiona’s experience is far from unique. Her change.org petition calling for accessible cervical screening now has more than 109,000 signatures. And cervical cancer prevention is not the only area of sexual and reproductive healthcare where women with disabilities face both stigma and physical barriers to care.

Kerry Thompson was left waiting 10 years for a cervical screening test

Kerry Thompson, 40, has muscular dystrophy and uses a wheelchair. She was left waiting 10 years for a cervical screening test, and six years for her contraceptive Mirena coil to be replaced, after being told she could no longer have home visits when she moved house.

“I’d had an abnormal result from my previous smear test, so I went into my new GP surgery and said I needed a retest. I was told they couldn’t give me a home visit – which I’d always had at my previous practice – but they also didn’t have a hoist to do it there,” Kerry tells i.

My coil was six years out of date

After 10 years of knockbacks, Kerry finally saw a doctor who referred her to hospital. “I hadn’t had a smear test in over 10 years, and my coil was nearly six years out of date as well,” she says. “I’d called the surgery about six months before it was due to be changed – just like I called them every time the smear test reminder came – but they couldn’t replace it for me.”

This became a serious issue for Kerry, who uses the coil to suppress her periods. “I have extremely painful periods, and having a period as a disabled woman isn’t a scenario I can expect my husband to have to deal with on top of everything else. I don’t have periods on the coil, but with my coil change being so overdue they started coming back, and the stomach cramps gradually got worse and worse, so I knew I needed to do something.”

‘I’m already worrying about what’s going to happen in two years time when I need a new smear test, or in five years time when I need to renew my coil again’ – Kerry

Kerry was eventually booked into her local hospital for an operation, where doctors carried out a coil change, smear test and cervical biopsy – which fortunately came back all clear. But, she says: “I’m already worrying about what’s going to happen in two years time when I need a new smear test, or in five years time when I need to renew my coil again.”

Research published by Jo’s Cervical Cancer Trust in August found nearly two-thirds of 335 women with physical disabilities surveyed by the charity were unable to access potentially life-saving cervical screening tests, and the picture is even worse for women with learning disabilities or autism.

The 2018 #MyGPandMe study, published by charity Dimensions, found just 19 per cent of women with a learning disability or autism had had a recent smear test – compared to 73 per cent of the general population.

‘We’re seeing two-thirds of disabled women missing out on really quite vital tests, and by not having them that could potentially be a death sentence in the future’ – Dr Hannah Barham-Brown

Dr Hannah Barham-Brown is a GP and a wheelchair user, and says she was “shocked and really disappointed” by the findings of the Jo’s Cervical Cancer Trust report. “I was expecting it to be bad, but I don’t think I was expecting it to be quite as bad as it is,” she tells i.

Dr Hannah Barham-Brown is a GP

“I feel I’m right in the middle of this one, and it’s difficult because as a GP I know we’re working in a system that’s really underfunded and overstretched, but ultimately the people who end up paying the price for that are some of the most vulnerable in our society. We’re seeing two-thirds of disabled women missing out on really quite vital tests, and by not having them that could potentially be a death sentence in the future.”

Both pieces of research also found a large number of disabled women come up against the same misconception Fiona faced from her GP. One in five physically disabled women surveyed by Jo’s Cervical Cancer Trust said healthcare professionals had assumed they are not sexually active because of their disability. Dimensions told i: “Outdated cultural perceptions that women with learning disabilities aren’t sexually active permeate into GP practices, and drastically reduce patients’ access to screenings.”

According to Dimensions spokesperson Gemma Jones, who herself has a mild learning disability, this assumption can result in women with learning difficulties not being offered smear tests just because they have a disability – regardless of whether they are sexually active or not.

Dimensions spokesperson Gemma Jones

“Often the person with the disability isn’t informed properly, so they actually don’t understand what’s involved or what the test is for,” she says. “They might not understand that it’s safer to have the test regularly than not, or they might not even be offered the screening that’s needed, and so lives are potentially being put at risk.”

‘The misconception that disabled women are not sexually active is not only hurtful, but dangerous’ – Jo’s Cervical Cancer Trust

Jo’s Cervical Cancer Trust also stressed that cervical screening should be available to anyone who is eligible, even if they are sexually inactive. Imogen Pinnell, health information manager at Jo’s Cervical Cancer Trust, says: “The misconception that disabled women are not sexually active is not only hurtful but dangerous. It is worth noting that ‘sexually active’ is a very broad term. HPV, the virus linked to most cervical cancers, can be passed on in lots of different ways, including anal sex, oral sex, touching in the genital area and sharing sex toys.”

“It can also stay in the body for many years, so may cause cells to change even if someone isn’t currently sexually active,” she adds. “But, ultimately, it doesn’t matter whether a person is sexually active or not. While it is rare for cervical cancer to develop in women and people with a cervix who have never been sexually active, cervical screening should be freely available for any eligible person who wants it, whatever their sexual history.”

Access to contraception is another tricky area for women with learning disabilities, who often require reasonable adjustments – such as a carer accompanying them to their appointment – to ensure they fully understand their options and any potential side effects. However, doctors often mistakenly assume that women with learning disabilities can’t experience the same sexual lives and relationships as someone without a disability, Gemma says, and either refuse access to contraception or aren’t equipped with the tools to properly explain the options.

‘The GP was shocked when I got pregnant’

Likewise, Fiona says: “There’s a whole stigma around sexual health and [physical] disability. The GP was very shocked when I got pregnant. It was a bit of an awkward conversation, because they just don’t expect you to have children, or to want the things that other people have. I remember my GP saying ‘no, you couldn’t be pregnant, not with your condition’. I had to really prompt them to do a pregnancy test.”

Dr Barham-Brown believes doctors’ education is at the heart of the problem: “In medical school, you only come across disabled people in the context of their disability; we don’t meet them in the context of their general lives. We need to start encouraging doctors to look more holistically at our patients and addressing all of their health needs.”

‘Gynaecology wards and women’s health care wards are equipped to receive women with disabilities and they do receive referrals from GPs. If a patient wants to get in touch about a referral then we can look into it further’ – Bolton CCG

“I’ve been to sexual health clinics myself only to find they’re up two flights of stairs and there’s no lift. There’s no easy way of knowing that’s the case before you go, and nobody should turn up and be surprised,” she adds. “We need to make sure sexual health services are fully accessible, and that people are directed to alternatives when they aren’t.”

Fiona’s local NHS clinical commissioning group, Bolton CCG, told i: “All GPs have been reminded of the process of referring people with complex needs. Gynaecology wards and women’s health care wards are equipped to receive women with disabilities and they do receive referrals from GPs. If a patient wants to get in touch about a referral then we can look into it further.”

A spokesperson for Milton Keynes NHS CCG, whose care Kerry is under, said: “The NHS Cervical Screening Programme is commissioned by NHS England and delivered by Public Health England. I believe [NHS England] would have a specification that would detail what is required of each location that carries out the cervical screening service.”

A spokesperson for the NHS said: “It is important that people tell their doctor about their disability so they receive extra support, but local NHS services should be making adjustments so women with a disability can easily be screened and get access to the care they need.”

Please choose your Language:

About this site:

This may be a good place to introduce yourself and your site or include some credits.

Why not write for us?

We welcome submissions and pitches for articles from specialist bloggers and local reporters.
We publish commentary and opinion, reviews, general news and political analysis.
Please email us at editor@24plusnews.com in the first instance with your ideas and sample articles.